This is my brain on migraines

My old friend the migraine

2007-12-11T17:32:00.000-08:00

My head hurts so much this week, and the last week and this headache is wearing down my will to do just about anything. I have taken my Imitrex and they seem pretty useless right now.

Massage made it worse. Baths don't help. Heat helps the back pain some. Sleep is all I enjoy, and I have to knock myself out with nighttime medication for that to happen because my scalp is so sensitive I want to cry laying on it.

I really need this one to get worse so I can go to the ER and get a shot for it or have it get better so I can be done with it. I'm tired and have far too much to do to be sick right now. I am in this horrible cycle of beating myself up for being sick.

I have forgotten what it is like to be sick like this. I don't get headaches very often anymore and I am grateful, but when i do, they last for a weeks and suck my energy and I remember just how draining and tiring and soul crushing they are.

Long time, no update

2007-10-18T14:35:00.000-07:00

Its been a long time without a post. A lot has been going on in my life. I left my job - well, gave my notice, I have a few days remaining. The stress of my work environment was not at all healthy for me and I found myself coming home daily with extreme tension in my neck and shoulders.

I realize all jobs have stress, but this one had additional issues that can be avoided at other places, i.e, personality conflicts with supervisors, extremely poor upper management, etc.

I am taking a break from working for a while. I am fortunate enough to have a partner and with the new domestic partnership laws I can get on his insurance with ease. YAY.

I recently came off zoloft. Also a big yay. I have noticed no difference in my headaches thus far.

The depo is still working in that it is reducing the number of migraines I have. I have about one really bad one a month. I consider this to be wonderful. One bad one equates to about a week and a half of junk though. I still have daily garbage to deal with, but I think a lot of this is related to job stress and I firmly believe it will go away here soon. I know some of that will come back when I start working again, but I also hope to find a new place to do yoga in the meantime, get myself started on a better diet - I'm pretty sure theres a gluten sensitivity at play here and continue to see my massage therapist regularly.

Hope everyone is having a pain free day. I am going to take a nap and rest, as today is not one of my better ones. Oh well, can't win them all

My freedom from migraines

2007-09-16T20:39:00.000-07:00

I am a rare and lucky person.

After a lot of putting facts together and consideration, going back on Depo-provera has turned out to be the miracle cure I had hoped it would be. I have not had a migraine in weeks. I have not had much of a headache to speak of in weeks. Small tension type headaches from work, but I know why those are there.

I am still on the topamax and coming off it and the zoloft will be the next step in seeing how much the Depo is eliminating all of my headaches, but I know for sure it is eliminating my migraines.

I am lucky. I feel blessed and happy. My questions of what to do long term still remain and I have not addressed them yet. I know being on depo has some side effects, such as calcium loss, the number one reason I came off of it in the first place and I do not know if a hysterectomy would do the same thing for me as having depo in my system does.

These are all things that still lie ahead of me. For now, I am enjoying my days of headache freedom.

I hope that everyone can find their own "cure" or at least their own cocktail that keeps the pain at bay.

Ultrasounds and keeping that work/home balance

2007-08-22T15:09:00.000-07:00

Today I had an abdominal and pelvic ultrasound to try and diagnose what is going on with my back/abdominal pain.

The abdominal ultrasound hurt pretty bad when the tech pushed on my kidney and gall bladder areas. I was pretty sore for a while afterwards. Overall I have not been hurting as much today as I did the past few days, but then again I took today off work and half of yesterday, have been sleeping a lot more and taking a lot more advil. I should probably wise up and make that connection.

Not sitting in a chair computing all day is bound to relieve some of my pain. Sleeping is bound to help me at least ignore some of my pain. I am about to curl up and take a mid-afternoon nap right now. Tomorrow it is back to work for me. No matter how much I would like to not go.

That is always something I struggle with, keeping a good balance between work and my health. Between work and my home life. My significant other struggles with understanding how I can have enough energy to go to work, but not enough to do more once I am home. Why I chose work over home life. In the end, I wish the answer were really that simple. I have to have my health insurance and I have to have a paycheck. I love him, and he is important, how does one keep that balance in check? I know I have not mastered it yet.

Kidney issues???

2007-08-20T23:10:00.000-07:00

I remember reading another migraine blog about potential kidney issues just recently, so this feels almost deja vu'ish.

I have been having back pain around the kidney area on the right side. It comes in waves and is pretty intense at times. Very hot and sharp. I shift a lot and cannot get comfortable. I couldn't get in to see my doctor today, but will try again tomorrow.

I left work early today and was able to sleep for a while. Tylenol is helping some, but certainly not eliminating it. My mom says we have some history of Kidney issues in our family and there is always the question of what role being on Topamax plays.

Time will tell and I certainly hope nothing is wrong, or that its nothing drinking lots of water wont solve. I hate that taking medications can cause more problems. I am contemplating my switch to as many alternate only health treatments as possible lifestyle again. I.e, taking only medications I have to, or ones where I absolutely know the benefits outweigh the risks or side effects and using alternative therapies/natural therapies the rest of the time. My life will be a lot of yoga, massage and acupuncture, but I think it will be better, especially if Topamax has given me kidney stones. Yuck. No more of this junk for me.

A road trip and pushing onward

2007-08-19T22:10:00.000-07:00

I had a very long day yesterday, but one that showed me if I keep my mind in the right place the pain can become secondary. The pain was still there, and more pain showed up due to spending all day in the car, but the things gained were worth more then the things lost.

I went with some friends, and really, a secondary family to me, down the Oregon coast and took a lot of pictures. I climbed rocks and felt waves breaks feet from my face. I saw lighthouses and laughed so hard I cried. I smiled and was truly happy. I spent time with people who make me feel loved and appreciated, people who give me a sense of belonging and people whose lives I feel I am impacting as they grow.

I spent time with the man I love and I crashed out fast asleep in his arms last night. I was exhausted today, but I woke up smiling and even with pain in my back that is hurting me badly, and pain I am unsure of the cause. I am doing my best to remain positive today. To remind myself that the pain is not all that exists in my life, it drags me down and it tears at my soul so often, but there is wind and rain and fresh ocean air, love and clam chowder and memories to be made still. I am not done living yet. I am not done living.

Censoring myself

2007-08-12T19:45:00.000-07:00

I'm tired of censoring myself, or of not writing in full what I am feeling. However it needs to be worded, there is more that needs to come out and I need to stop being concerned over who has or might find these words.

I opened two pill bottles tonight. Opened the pill splitter to break my 100mg Topamax so I could get the appropriate dose. Split my 100mg Zoloft pill by hand.

Taking pills is exhausting tonight. There they sit on my desk in front of me. One whole pill, two halves, waiting for me to get up, find some water and take them. It seems overwhelming to be medicated. It seems overwhelming to be sick. Such a simple act that feels like it could rob me of everything.

I am almost out of zoloft. I keep postponing calling in a refill. I know full well it does nothing for my headaches. It steals my libido and offers me nothing in return. Yet, I take it, because I don't want to irritate my doctor. I want him to trust me, so he will give me the best treatment, but if he wont listen to me when I say I am not in need of anti-depressants, am I really getting the best treatment anyway? Can I not value my own health enough to give him the ol heave ho and find someone who doesn't think I just need to relax. Do you know how many hot baths I have taken, how many hot packs I have put on my neck, how much yoga, massage and acupuncture I have tried? You live with a headache every day and try to tell me you aren't feeling just a wee bit anxious. I don't need zoloft. I need my headache to go away.

Day whatever the heck it is of Depo. The sweats are back. I now know that the cold, clammy skin, sweating like all holy hell with little to no exertion is how my body adjusts to new hormones. I still cling to hope, that after the adjustment phase and my body has stopped cycling, the pain will go with it.

Eternally hopeful. Thats me.

IUD Removal and back on Depo Provera

2007-08-07T22:18:00.000-07:00

One of the things my doc and I decided to do in order to try and conquer my migraines is alter my hormones. I used to be on Depo-provera and never ever ever had a migraine, let alone a headache very often. I used to tell people I was amazed that I never got headaches.

Late 2004, I switched to Depo-Provera Lo, a lower amount of the same stuff and started experiencing chronic daily headache. I never made the connection. I also came off Zoloft around this time. When I finally stopped Depo Provera all together and started having my period again, I experienced my first full blown migraine.

At one point I had an IUD put in. Yesterday I had it removed. I was nervous, having it put in was not the most pleasant experience and I was worried taking it out would be worse. It was easier then expected. There was some cramping and I certainly didn't want to run a marathon afterwards, but I was surprised by how uneventful the whole thing was. My doctor made me feel very comfortable.

I also got my first shot of Depo-Provera. I know it takes a while for hormones to adjust and everything to get back to where it was. I am still on 150 mgs of Topamax and 50mgs of Zoloft a day. I am trying to get my cocktail of meds just right. I am also trying to keep a journal this time.

I will say that the scalp burning has been reduced already. I have had more breaks in pain throughout the day today and last night then with any other medication/treatment. I am holding out a lot of hope. I am also trying to remember it takes time for hormones to adjust and for my body to stop cycling. I sure hope this is the answer. I keep my fingers crossed. No matter what, I am glad to be done with the IUD. It was not the best method for me. I am grateful for the relief I have received from the Topamax despite its side effects. I feel like I might be adjusting to it finally.

One day at a time. One day at a time.

Telling when one is coming

2007-07-31T19:30:00.000-07:00

Its been a while since I have had a bad (level 7 and above) migraine. Today I woke up cranky for no particular reason. I have been lagging in energy for about 2 days now and I have been having increased burning sensations on my scalp. Still, did I put 2 and 2 together. Nope. Not I.

Today around 4 the pain started creeping in. I took an Imitrex, which has helped some, but it seems that it is only helping when I hold perfectly still. Not to mention Imitrex and Topamax seem to not enjoy each others company. My muscles in my neck and back are getting angry, I am sore, as if someone has punched me in my kidneys and the pain has radiated back to my neck. The tightness is creeping in around the right side of my head, up over my eye. The heat, the anxiety, the migraine cometh.

Dropping down

2007-07-20T22:54:00.000-07:00

Tonight I made the decision to drop back to 150 mgs a day of Topamax. I was supposed to up to 200mgs, but instead I went down. This is a first for me. I usually try to max out to get the full effect, but for once side effects are worse then any possible benefit.

For the past week I have felt like I am shaking internally. This morning I did yoga and it was hellish. My hands and feet tingled something horrible during so many of the poses. I have eaten so little and gotten full so fast. Yesterday I slept for 11 hours and woke up feeling exhausted and still with headache. My bowels are like bricks and my brain is deep in a fog like never before.

I had to ask myself if eliminating pain is really all that matters and in the end I want for a greater quality of life not just pain relief. So tonight, I compromise with my body. Hopefully it will accept my trade.

Doctor Day

2007-07-18T22:08:00.000-07:00

I had a fairly long visit with my doctor today to discuss how I am doing on the Topamax and figure out what we want to do about my higher level headaches.

We ran through the long list of side effects I am experiencing on the Topamax and in the end still decided it was best to stay on it. I am a bit in love with not having low level headaches at the moment. My doctor did seem concerned with the amount of tingling I am having in my hands and feet and wanted to talk to my neurologist. Doc even suggested possibly doing some blood work. I decided to let him worry about that. I have enough on my plate as is. I am so used to having some sort of tingling sensation in my hands, I never give it any second thought anymore.

After having been on the Topamax now through two menstrual cycles, I am firmly convinced that my migraines are hormonally related. We decided we will go ahead and remove my IUD and put me back on Depo Provera. I am EXTREMELY nervous about having my IUD removed. My strings are missing and last time I had my IUD checked it was done so via ultrasound, so I know its removal might get complicated. My doc and I talked about how complicated this process might become. I left no less scared then when I walked in.

However, once I have it out and am healed from having a variety of objects forced into my cervix, I hold out a great deal of hope for having my migraines relieved by having my menstrual cycle eliminated. Hope that this too will eliminate all of my headaches and I can come off Topamax and regain my appetite, my tingling will go away, my depression will cease and life will return to some sort of normal. Wouldn't that be odd?

Topamax and triggers

2007-07-12T11:05:00.000-07:00

One of the things I still struggle with is remembering my own triggers and accepting them as real. I know that might sound crazy, but I have always hated that my triggers are what they are, because they force me into a lifestyle I am not always so keen on. One that takes away a certain amount of freedom and imposes rules and regulations on me.

Two of my biggest triggers are lack of sleep and not eating often enough. This second one has become a major lifestyle change for me as of late for two reasons. One, I just flat out had to accept that this was in fact triggering my headaches and stop and eat more often feeling like an inconvenience to others, and two, being on topamax is lowering my desire to eat at all. I now try and have snacks readily available at work and at home and force myself into eating. Which is not a very pleasant situation thus far.

Last night I did not sleep much at all, too hot, too much tension in my personal life, and this morning my appetite was not worth much and now I feel the pain creeping into the back of my head, doing the dance it does as it slowly arches over the right side of my head, threatening, pulsing, teasing, causing me to contemplate my options, stay at work, go home, imitrex, nothing, more food, how should I treat this one? Each one always feels like a game of Russian roulette.

But in all of this, I feel so very grateful to have the Topamax, it is improving my quality of life. I feel it has knocked out my lower level headaches. For the first time in a long time I have been able to say I have had more good days then bad.

There are side effects, and losing my appetite is going to be hard to work around, especially as I move forward in upping my dose to try and knock out some of my higher level headaches, but I will blend all my food and drink it through a straw if need be. My hands and feet tingle something awful. I notice it more after applying pressure to them. Petting my cats has become a strange experience, one I still enjoy, but find very odd. Its as if my body is waking up over and over and over again throughout the day. Strangely, I do not get the sedation from Topamax, only when I first up my doses, but then I find I am more energetic on the whole.

Wishing anyone who reads this a pain free day

Universal health care

2007-07-08T21:22:00.001-07:00

Something that has been on my mind a lot lately is universal health care. I could write for days on the topic and why I feel it is not just a good idea, but something we cannot live without in this country. With all of this thought, I feel I have been doing very little to help aid in making this a reality. So tonight I blog. I use what resources I have and I do something.

I cannot stand by and watch people with pre-existing conditions, like myself, not have the option to leave our jobs, knowing we would lose our health insurance. I am a un-married woman. That would ruin me. I would not be able to afford my meds, my health care keeps me tied to my job and no matter how bad the pain gets, I stay. Tonight I start my own revolution.

Here's what I have done so far and I urge you to do the same.

Go here and sign this petition: http://www.michaelmoore.com/sicko/what-can-i-do/petitions/pnum649.php

In addition, I plan to write letters to the city of Portland urging us to implement a city wide health plan. I will write letters to the local papers. I will write letters to the state of Oregon, doing the same, letters to my President and Vice President. I will not vote for anyone who is not offering a solution to the current health care crisis. I will not give up.

Questioning it all

2007-07-07T22:15:00.000-07:00

I have been questioning everything lately. I do this every so often. Wondering if my diagnosis is right, are these even migraines? Yes, part of me is sure. I have had a migraine. I have had something so bad that I ended up in urgent care unable to have the lights on. I get headaches so bad I have to lay down and take naps and am unable to work, but Migraines? These daily things? Migraines? Seems a rather hefty term to throw on something I can type through, something I can work through.

And what do I make of the sore neck? The noises it makes when it pops all the time? What do I make of the tingling in my hands (pre-topamax), What do I make of this burning on my scalp, this constant burning sensation that is there with or without pain. It seems to have no connection to the start or stop of a headache. I cant even tell you when something is coming or going anymore, because something is always there.

What do I make of the chiari malformation, the CSF flow study that showed decreased flow that is constantly sighed at by doctors with, well, we really don't know, and eh, it's fines, or I wouldn't worry about it.

What do I make of the back pain and the lack of energy, is it the medication? Have I become so overdoped I will just never know anymore what is what?

Do I even like my doctor? I know I don't like being on zoloft, and I can't tolerate my scalp feeling like it's on fire. I just need to find it inside myself to stand up and be assertive when I go see my doctor next week. Time to make sure things are correct.

My own Independence day

2007-07-04T15:30:00.000-07:00

This fourth of July I want to celebrate all of the things I can still do for myself. Though those things are less then they were this time last year, they are still great in number and dwelling on how small in number they may be this time next year or the year after will only hold me back from enjoying what I have in front of me right now.

I am able to:

Hold a full time job as a web developer
Make my own medical decisions
Ride my bike once a week
Take yoga once a week
Take photos
Take a photography class once in a while
Dress and feed myself
Walk, move, without the use of a wheelchair or mobility device
Take care of my cats
Make love to my boyfriend
Travel once in a while, short trips more often, long ones, maybe once a year
Read without pain
Wear contacts, because the weight of glasses kill me (thank you technology)
Blog for therapy
Live in a town with great public transit that allows me to not have to drive

And I know there are so many other things that I have to be grateful for and can still do on my own and I hope to spend not only today, a good, low pain day, but every day remembering what I am capable of. Tonight I am going to the movie theater. An outing I have not undertaken in a very long time. I am excited.

6 Weird Things

2007-07-01T14:09:00.000-07:00

I have been tagged by Kerry at The Daily Headache with the six weird things meme. I don't know if all of these fall under the "weird" category, but I found them to be somewhat interesting aspects of my life.

I have an asthmatic cat. I actually intend to dedicate an entire post to him. He allows me to gain a lot of perspective on my situation and find a lot to be grateful for. My head may hurt, but at least I can breathe and at least I can tell someone when I hurt. He places a lot of trust in me to know when he is not feeling well and to be able to read his moods.
I prefer hard candies to chocolate. Willy Wonka candies are the greatest. Runts and Gobstobbers rock my world.
I am an amateur photographer. I shoot film primarily with a preference for medium and large format. My camera of choice is my Holga, with my Canon Demi S 35 1/2 frame coming in a close second.
I sleep with a stuffed monkey named Simon. In fact, I have a fairly large collection of stuffed monkeys. I think I have purchased 2 of the approximately 30 I own for myself. People knew I liked monkeys and just started giving them to me as gifts.
I know way too much about pop culture. It just sinks in with great ease. I don't actually care all that much about what is going on with people such as Paris Hilton, but I can tell you without any effort.
My boyfriend and I keep our bedroom clock set 20 minutes fast and refer to it as "fake time".

The word disease

2007-06-20T19:52:00.001-07:00

I am sick. I have a chronic condition. Still, I cannot accept this. I am still too new to this to have my arms fully wrapped around this idea. I am not yet able to embrace having headaches as a part of who I am.

I am not able to wake up everyday and accept my limitations with a smile on my face, fully aware that I am, in fact, sick. Knowing that each year has not gotten better for me, but worse. Knowing that each year, will most likely continue to not get better for me, but worse.

I read so many that are able to do this, who seem to have a grasp on their limitations and do not seem to grieve for that which they have lost or are still losing to this disease. I am still grieving. I am still hurting. I am still fighting. I have not found a way to tell myself to be sick, to be diseased, to accept that this is who I am.

Though I know that it does not make me less valuable as a human, I cannot help but feel that huge pieces of my life are being robbed from me daily, that more and more compromise is being made with each passing day. That my plans for travel become wrapped around sleep patterns and medication. My entire existence begins to revolve around trips to the pharmacy and hours spent in doctors offices, neurological or otherwise, and if not there, in bed. My headaches dictate my day. I do not.

My desires are clouded by fear of pain, my days are limited by energy levels that change with the wind, my hope begins to disappear with each passing day and the days without hope leave me feeling the worst.

Additional Symptoms and Alternative Therapies

2007-06-18T18:26:00.001-07:00

Since my first post was really just a list of medication and any mention of symptoms were about head pain, I thought I would devote this post to all those other things that happen in my body and all the other ways I cope that don't involve a chemical.

Other Symptoms
Hand Symptoms/ Sometimes Feet too

Faux sensations of swelling
Tingling
Disconnected from body sensation
They also get very cold at times

Facial Spasms - these are always not painful, but sometimes can be rapid and long lasting, other times they are very slow and just make me feel as if someone is slowly pulling my skin tight against my skull

Burning/Tender Scalp - this used to just be pre-migraine attack. Anymore, it seems to be omni-present, only worsening pre-migraine attack.

Upper back pain. I have burning pain that runs from the base of my skull to about mid way through my back. It comes and goes. Always worse when the headache is worse.

Fatigue. What more can I say, this has been my biggest struggle lately. The pain is something I have someone learned to deal with, the fatigue and low energy days have taken a toll on me.

Though it may not be classed as a symptom I have a constant need to pop my neck. I feel as if there is always a weight at the base of my skull. I was not able to pop my neck for many years until I had an adjustment by a naturopath. I am forever grateful.

Sweating and intolerance to heat. I have a very hard time being in heat anymore. It feels like it zaps my energy very quickly. I am also somewhat light sensitive.

Alternative Therapies
Massage - I go when I can. I find it feels good no matter what, the first one seemed to be the most beneficial. Following sessions have not had the same effect. Maybe I just enjoy a good massage.

Acupuncture - I used to go weekly, but moved to a new neighborhood and have not re-established myself with a new acupuncturist yet. I found it to be fairly beneficial. Anytime I am able to just sit and relax is beneficial though.

Yoga - I go weekly at the moment. I love it.

Bike riding - I enjoy this, but sometimes wearing my helmet is simply too much pressure on my head and I cannot endure to be out for too long. I also tire much easier then I used to and this is a bit more high impact then my body is able to take. I am working up to doing more all the time.

A brief overview

2007-06-13T20:32:00.002-07:00

After having a separate blog for a very long time, I decided it was time to dedicate a blog just to my efforts on coming to terms with having a chronic condition. I wanted to make this first post a simple list of exactly what I have and exactly what I take and have taken thus far to combat it.

A short history. In 2004 I started having daily headaches. Some of which were rather nasty and felt like electric shocks through my head. Several MRI's and neurologists later, I was found to have a Chiari Malformation of 5 mm. In the words of several doctors, too small to matter. This is still a point of contention and remains unresolved.

I was put on Neurontin at this point.

In 2006 I started having full blown Migraines. I was officially diagnosed with Migraines and Chronic Daily Headache in 2007.

Past and Current Medications

Neurontin - discontinued 2007

Inderal La - started and stopped 2007, lowered my blood pressured to a scary point

Prednisone - taken as a burst to try and see if rebounds were causing the problem

Zoloft - Started 2007, have taken in the past also, still on, not sure why, will write more about this topic later

Topamax - currently on, working on getting up to 100mgs

Imitrex as needed

I also have a Mirena IUD, so there are hormones at play too. I hope someone else finds this blog useful. I know I have found many others useful in simply knowing that I am not alone in my thinking and all those bizarre things I have going on in my body are in fact, not all just in my head.